Autism's Love: Living, Loving, and Coping On The Spectrum: Chatting With Marcus Boyd

Warning: References to physical abuse may be triggering.

A few weeks ago, I had the pleasure of chatting with my friend, Marcus, who is an amazing human being. Marcus Leonardo Boyd, 37, Dad, Activist, Music Composer, and Producer. What I admire most about Marcus is his love for who he is and what he stands for. Marcus is autistic. He was non-verbal, unable to take care of his personal needs, and experienced uncontrollable outbursts. He was told that he would always need care. Marcus’ Grandmother thought otherwise, "Nobody knows but God."

There was little understanding of autism when Marcus was diagnosed. I dare say, on some levels, there has been little progress since. Marcus was enrolled in talk therapy. He thought it would be an outpatient program. What happened to Marcus is hard to describe, so I’ll say this. Marcus underwent a series of therapies that should never have happened, and if autism were better understood, would never have happened. Too often, the unspeakable is woven into daily life for the disabled, and It does not matter if the disability is visible or not. The same seems to happen time and again. It is the price we pay for living in an unapologetically apathetic society when it comes to disability.

Marcus doesn’t like to talk about his past much. I understand. It’s hard to relive the unthinkable. That said, being able to purge the pain also heals. A good friend, Rafiya Muhammad, encouraged Marcus to talk about his story. He was reluctant but did it anyway. While he talked, Rafiya recorded it and created a work of art in the form of a docu-short about his life, My First Word. At the time, Marcus didn’t understand how his story would touch the lives of so many people.
I’m glad Marcus had the courage to look into his past and take hold of his future.

My First Word (trailer), A 65 Street Production

Warning: Possible triggers

My First Word shines a light on mental illness, a common comorbid condition in adults and children diagnosed with Autism Spectrum Disorder. Depression in ASD adults is diagnosed at a rate 4 times higher than that of the general population. Having a dual diagnosis of ASD and depression is thought to increase medication therapy and caregivers' need with an increased risk of self-harm and suicide.

I asked Marcus to describe what his depression looks like. "Me sitting in my room alone with the lights off, sitting in a corner listening to the same sad song over and over again. Not eating. The longest I’ve been without eating is 6 to 7 days. Sometimes I eat too much, binge eating sporadically."

What causes depression for you? Feeling unwanted, unloved, non-supported, rejected, neglected, and bullied.

How do you come out of it? I stay in depression mode for a period of time. It could be days. Gospel music and God helps out.

Have you used any services to help with your depression? I have utilized therapy for many years, from the age of 5 to 24.

I hope autistic people experiencing depression and anxiety read Marcus’ story and find the courage to seek help.

Once you taste independence, there’s no going back.

"It’s not easy dealing with autisms on a daily basis," Marcus says. “It’s a neurological disorder. People don’t understand the way that we think, how we react, and how we process, or how we learn. It’s not easy. It’s not easy being completely independent. Everybody says to you, you are an adult, you should have a job, or you should have your own place and all this other stuff. It’s much tougher not being able to conform to the 9 to 5 traditionalism."

Marcus also talks about an uncle who lived with his grandmother for as long as he can remember. There was never a discussion or question of the possibility of his uncle having a diagnosis, but everyone knew that there was something. It was not a big deal. "Everybody loved my uncle. We knew when we visited my grandmother that my uncle would be in the 3rd bedroom. That is where he always was. It didn’t matter that my uncle was very quiet. He didn’t have to make noise. We just knew where he was." Marcus’ uncle has never lived on his own.

Marcus has lived on his own but recently moved in with family members for a short stint. We joke about how difficult it must be living with relatives again. I, for one, could not bear the thought. Marcus seems to be handling it well, though he is eager to be on his own. Markus doesn’t want to be like his uncle, living with relatives for the rest of his life. He has plans to live independently again. Once you’ve tasted independence, there is no desire to go back. "It’s part of being autistic, living with relatives. People don’t understand how hard it is to process all of the responsibilities of living independently. There’s always so much to deal with."

No truer words have been said. It’s hard to live independently. The pressure is real and everlasting. I suppose it can be a blessing to have family members and friends to stay with periodically.

“Malakai is not just my son. He is my destiny.”

Marcus recalls when his son was an infant. "The pregnancy was high risk, but we made it work. Malakai is a miracle. I have every ultrasound, every video, every photo, I got it. I have his one-year-old shoes, baby blanket, and the blanket he was delivered in. He’s more than just my son. He’s my reason for change. I like to call Malikai my destiny. If it wasn’t for him, I would not be on this journey. And I gotta honor his mother, Martina Knight. She’s a good mother. She sacrificed a lot for him and for me. She’s not my baby’s mother. She’s the queen to my son. That’s just what she is. Every night when she puts Malakai to bed, she tells him, 'You are smart, you are handsome, you are intelligent, you are a genius.'

"My mission is to be able to leave a legacy, not just for Malakai, but to be able to change life for her and him. It has nothing to do with romantic love. Let’s not get this confused. It has everything to do with God blessing her to give me my destiny. So it’s like this, how can we say we love and honor God if we are not going to love and honor the woman that gave us our child. No, I’m not in love with her, we’ve not been together for 3 years. If only we could stop hating the women that give us children, even if they hate us when we do wrong. It’s about us being children of kings and queens. My destiny will grow into the king that he is.

"It took many years for me to get to this point. Sometimes we say we want relationships, but we are not ready for the long-term commitment of being in a relationship. For me, I chose the street terminology of a relationship. I’m the man. You're gonna listen to me. I didn’t put God in it. I put myself in it. I didn't know if we were spiritually yoked or anything. I looked at my son’s mom from a lustful sense. I didn’t look at her in an intellectual sense. I just wanted to smash. This is now the consequence that comes from it. Now I get her attitude before I get her happiness or acceptance. I didn’t enter into the relationship the right way. Most women, when they talk to you, won’t sleep with you on the first date because they want more."

"When Martina was pregnant, we worried about Malikai being born autistic." Malakai is 4 now and shows no sign of having autism or Asperger's. "We’re planning on having him tested anyway, just to be sure. We want to make sure he has everything he needs to be successful in life, whatever that looks like."

How did you feel about becoming a dad? I didn’t believe it. We took several pregnancy tests. I got excited after we confirmed the pregnancy.

What was it like after you bought the baby home? It was difficult at first. I had a lot to learn. My sister Darinda gave us a lot of help.

"I miss my son. I don’t get to see him like I want to. I want to be like the Bill Cosby or Carl Winslow kind of dad, the kind of a dad that writes messages on post-it-notes and puts them in his lunch box. I want to be super goofy with him. I plan on recording video messages and sending them every month so he can know how much he means to me. For now, my mom and sister get to speak with him often.

"Malakai’s mom and I don’t believe in spanking. She’s raising him to be respectful without spankings.

"Even though Malakai’s mom and I aren’t speaking right now. I know if she ever needs me, I will be there. She will always be family, and she will never have to worry about being hungry or homeless."

Malakai, like his dad, loves music. It was one of the few things that kept him calm as a baby. Malakai is proving to be musically gifted, and he loves to sing. His favorite song is Shake the Devil Off by Dorothy Norwood. Marcus swears, Malakai sounds just like Mike Tyson when he sings.

Do you have any words of wisdom for other dads? Parenting doesn’t come with an instruction manual. Continue praying, and have a circle of support. You have to have a good circle. You have to have family and friends around that won’t let you suffer fear and depression. You are not going to know everything at first. You have to take it one day at a time.

Marcus gives hope to other autistic dads who wonder if they can be good parents.

“Who asked you to reimburse me for love?”

There is the old adage, “Experience is what you get when you don’t get what you want.” Marcus’ life is rich in experience. It is through his experiences and by his sister Darinda’s love that he found faith. There was a time when Darinda was the only person Marcus would listen to. Marcus is always dropping pearls of wisdom faceted from his experiences and his grandmother’s determination to never give up on him. She made Marcus read everything she could get her hands on, always teaching and expanding his world. Grandma’s words and Marcus’ love of music are part of what shaped him into the person he is today. Marcus’ Grandmother died when he was 24. He recalls her final request.'Do not let your disability make room for anyone else at the dinner table.' "At first, I thought she was delusional. I didn’t know what she was talking about. Now I understand." Marcus’ grandmother was saying, 'don’t let your disability become an excuse, because everybody’s got excuses for why they can’t be great. If we both have the same excuse, we are both eating from the same dinner table.'

There is another person who made a major impact on Marcus' life. He was 3 or 4 years old when he met Dorothy Carr, his social worker. "Dorothy saved my life," recalls Marcus. Marcus was 5 years old when his dad beat him with a baseball bat because he was late coming home from school. Marcus’ dad hit him on his back. When Marcus fell to the floor, his dad continued beating him with the bat until his rib broke. Marcus was later admitted to the hospital. Teena, Marcus’ mother, did not visit him while he was in the hospital, but rather it was Dorothy who stayed by Marcus’s side. "She was like a godmother." Marcus was removed from his parent’s custody and lived in more than 13 foster homes.

Dorothy Carr’s was always near. Her love and presence were larger than life. "She wasn’t like other social workers." Dorothy did not offer superficial gestures of kindness. She gave Marcus unconditional love and opened her heart and home to him. "When her supervisors told her they could not reimburse her when she took me home or on family trips, Dorothy quietly said," 'Who asked you to reimburse me for love?'

"Dorothy Carr is the reason I love plus-sized women today." At 6’4, 225 pounds, a devoted wife and mother to 3 children. Dorothy was the epitome of love and protection. "For a long time, I had lost my faith in God. I could not understand why I got Teena as my mom instead of Dorothy Carr. She was always affectionate, kind, loving, and patient. Every time she saw me, she gave me a big bear hug, almost causing me asthma."

"I’ll never forget Dorothy Carr. She saved my life, and in my heart, she is my mom."

Dorothy Carr is no longer with us, but like Marcus’ grandmother, she left a legacy of love.

Love truly does conquer all.

Shake the Devil Off